About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, September 6, 2008

Hi Family & Friends!

Let me begin w/something fun! I've been taking Saba in to work w/me all this week! Well, I had taken some time off, so it was really only Wed.-Friday! She makes me feel better (my therapy bear) so I like taking her to work! Anyway, Grace, one of my co-workers, has a monkey from the Build a Bear collection and she had been telling me she would bring him in for a play date w/Saba! So, Friday, Ryan the monkey came in, so he and Saba spent the day together! (see photo) Grace would tell me that if Ryan didn't behave to let her know! Her fiance Raul is one of the courts baliffs, so when I saw him in the hall, he asked how Ryan was doing? I told him Ryan was in love! Right before the end of the day, I picked Ryan up and hugged him and she asked if I would like to take him for the weekend! "Oh yes"! I was so excited that she trusted me to take care of her furry kid for the weekend! Grace and her fiance Raul had put Ryan together and dressed him so cute in some khaki shorts and polo shirt! He's wearing an Astros baseball cap, but no shoes! That's ok - Saba lent him a pair of her brown sandals!

Got up this morning w/every intention of running some errands and meeting mom for lunch. As I mentioned before, I have been hacking w/the crud that is going around. I was ironing the shorts and t-shirt I would wear on my outing, and I could just hear the wheezing in my chest. I told Mark I just had to cough that gross phlegm out and I wanted to do that while I was @ home - just in case I had a bleed. So, I hacked and was trying to get that darned crud out and I could barely breathe, so I really coughed to get it out and sure enough - I started gushing blood! In seconds the front of my tank top was covered in blood and it ran down my arm and down my body! It's as if someone threw a bucket of blood @ me - I headed to the kitchen sink w/Mark following close behind! I immediately grabbed a mirror and started taking the dressing off as Mark was grabbing a paper towel and wetting it so I would be able to put it over the area that was bleeding and apply pressure! We can't get this done fast enough it seems! Mark helped me take that wet tank top off as I kept holding pressure on the wound site. Mark tossed the tank top in the washer and soaked it. I checked my wound area a couple times, until we found it had finally stopped bleeding. Got myself cleaned up and we headed to the area where I sit and Mark redressed the wound area. So that took a chunk of time out of our morning. Meanwhile, Mark gets a call from his supervisor @ work telling him there was an emergency and he needed to come in! Apparently the Memorial Colliseum had been broken into and since it's City property - Mark needed to go in and take care of the problem!

Mom called shortly afterward saying she was ready to run errands and go to lunch! I met her @ JoAnns as she is buying yarn to crochet the boys each a throw! After that, we headed to Red Lobster and it was super crowded! Mom called Markie Poo Hoo to see if he wanted to join us, but got his voicemail and mom left a message. Before hanging up, she added, "if you join us for lunch, I'll buy you crab legs"! Is that a bribe or what? It worked! Markie called a few minutes later and asked whether he had time for a shower before joining us. We had a 25 minute wait, so no problemo! We were so glad Markie could join us - he is hilarious and wonderful company! He had us laughing - so quick w/the wit!

During our lunch, a couple of the wait staff came over to compliment the furry kids that were sitting on booster seats next to me! As we enjoyed our lunch, we started to hear singing coming from a nearby table full of ladies - it was the Sweet Adelines! It was so cool and they got a big round of applause from everyone in the restaurant! They were celebrating a birthday from someone in their group!

Went to moms house for a bit, Vicente was heading out to his daughter Margarets house, so mom and I had time to visit. I went over some computer stuff w/mom and not long after, Vicente was home again. I was missing Mark and decided to head home myself, so here I am!

When I write about the bleeds - it's mainly to give y'all a chance to know something about the life we are living right now. I feel bad that we don't always have time to visit w/friends, or always answer e-mails, but these bleeds take a lot out of us sometimes! We've learned how to handle these situations, but it also interrupts what might have been a typical day. I just live for the weekend when I can relax @ home w/my wonderful husband and feel "safe" knowing if anything comes up w/my avm, I can deal w/it so much easier than when something happens @ work! Ok, I know I'm selfish, because when I'm home, I love, love, love to read and that's what takes up time too! I think I mentioned that the other day I called Rhonda Sharp (PA in CO) and asked whether we could cut back on the Neurontin - the med. that was making me so drowsy! I was staggering 4 of those capsules a day, so Rhonda told me to go back to taking 2 a day for the next couple of weeks. I'm telling you this because now that I'm not so darned drowsy, I've had a chance to complete New Moon and just started reading Eclipse from the Stephenie Meyer Twilight Series! (see photo)! It's reading and relaxing that help me deal w/all the avm crap (excuse my french)! Of course I couldn't do any of this w/out the most amazing husband in the world! Mark patiently helps clean me up, cleans the wound area and redresses it better than any wound care therapist ever could! He never complains, just gives me lots of hugs and reassurance! He took the photos of Saba and Ryan and put it on the computer so I could include it in my blog! I am really blessed to have so many prayers and friends and family that care - Thank You so much!

Please include my new e-mail buddy Marijn from Holland. He is going through a lot w/his avm and will be having surgery soon. Don't want to disclose much since I don't have his permission, but prayers would be so much appreciated!

XXOO's!

Cyndi

P.S. I want to thank my Aunts - Josie Sanchez and Sister J. (and my sister Celia) for all signing Shalons guestbook on her website! Thank you, it means a lot to her and to myself as well!